~ Sharing My Story, So We Can Each Edit Our Own

Monthly Archives: January 2016

If I don’t recognize incoming phone numbers, I rarely answer the call. And if they leave a voicemail, I am usually very bad at actually listening to it. Well, I received a voicemail yesterday afternoon when I was busy with Arrine, and it took me until tonight for me to actually listen to it. Turns out it was my kidney specialist. My creatinine level increased to 108 on Tuesday. So he was letting me know that he is going to head with starting to schedule a kidney biopsy. I don’t know any other details, and will just wait for his office to call me. But hearing this news, I just sat and cried. Because the last four weeks with the levels coming down, mentally I had placed the kidney issue under the Resolved column. I knew that we had to keep monitoring them, but I really had stopped thinking seriously about it being an issue. And that all changed within seconds from just listening to a single voicemail.

I know it’s for the best. And it will hopefully give us some more answers. But I just want this to be over…

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I haven’t been very vocal about the ongoing frustrations I have had with my previous employer and resolving my final pay. But I had multiple questions and none of them were being answered. So I resorted to filing a complaint with Employment Standards, and woo-ee! Then I started getting some answers. Huh. Funny how that works.

I have been told that the monies owed to me will be deposited this Friday. That is two months after my final day, and by Employment Standard regulations, an employer has THREE DAYS to get you your final pay.

Three days. Two months. Neither here nor there?!

So just a reminder that in most cases, you are the only one looking out for you. I am not saying that everyone is out to get you or corporations are deliberately trying to take advantage. But mistakes happen, and lots of the time, the best care and attention to a matter that involves you, will only be done by you.

It goes along with the learnings from my health journey – you are your own best advocate. And you have to be.

And to quote a girl with way more money than I’ll ever have… “B*tch better have my money!” – Rihanna

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I used to share a lot of the things I did connected to my mom on social media. Whether it was on Facebook or writing in this blog. But I really noticed this Christmas, how much I actually did that was related to my mom, and that I never shared through social media. Lots of times I would take a picture with the intent to share it later, but I just never did. I don’t know if this is a sign of me progressing through my grief or just laziness.

Or maybe it has more to do with requiring less validation from external sources. I just do things for me now, without the feeling of urgency to share.I don’t quite know, but I’m OK with it. But I will share that I was honoured on Christmas Day, Trisha told me I could only join her and her family if I brought sticky toffee putting. Which I did. And it was enjoyed thoroughly. I did share the story of the recipe with Trisha’s mother-in-law, but that was it. Otherwise we just licked our plates clean.

I will say I was very pleased to hear how some of my mom’s dearest friends and family carried on the sticky toffee pudding tradition this holiday season. Let’s never stop…

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I had a lung doc appointment on Wednesday and saw my kidney specialist today. Here is what they had to say.

My lungs still look the same. This is determined by the breathing tests I do each time I see him, so once a month. However, I have been quite congested recently and have developed a cough, that started with a sore throat. Arrine has been sick, so I assume this is from her, especially now that I am off the antibiotic. But because these are similar symptoms to when this all began, he wants to ensure that this isn’t anything more serious. So he ordered that I get another chest x-ray to see. A possibility is that as the prednisone is decreased, the lung symptoms return, which we don’t want and need to stop if that really is the case. He said he would call me if the x-ray shows any concern. Otherwise the plan is to see him again in a month and do the testing like we always do. He wants to ensure that my lungs are monitored as we decrease the prednisone, to be proactive incase anything should go sideways again.

Kidney doc is like, “What zee heck?” My last four weeks of blood work showed my creatinine levels decreasing, until this past Monday, where I was back up to 100. So, we are sort of starting the cycle all over again. We will continue doing the blood work every week to continue monitoring. And if there are significant increases, then the kidney biopsy is back on the table. But if I still hover below the 100 mark (which is considered normal), then we will just carry on monitoring. His concern is that there is some more significant issue with my kidney function and does not want to let it go undiagnosed. But one thing interesting to note, is that he looked back in my history and in the 2002s, my creatine numbers fluctuated between the 70s and 93s. So he also explained that these fluctuations could just be normal for me, and with more data, we will have a better idea of what is “normal” for me.

I like this kidney doc. When he turned to his computer to pull up some data, he paused and said, “You want to know this stuff, right?” And I was like, “Heck ya!” It feels really great to have doctors recognize how much I want to really understand and be a part of the decision making with my health. And then when we were talking about possible outcomes, he said, “Well, based on probability, you have a good chance that this issue with your kidneys isn’t serious.” And I was like, “I’ll take it, probability!!” (Even though the odds were against me to begin with, but let’s not focus on that.)

Thats’s it for now. I’ll decrease down to 20 mg this weekend, then see my rheumatologist in two more weeks, then these guys in another month. And keep getting pricked once a week. MY BLOOD WORK I MEAN!!

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When I read this Christmas card from one of my mom’s dear friends, I had a good cry. I love hearing and knowing that others are remembering and honouring her as well, in their own ways.

“…I think of Anne Marie, and of my teaching days. She was such a good teacher, principal and friend. At Samhain, October 31, I attended an event at the Unitarians where we called the four directions, and cast a circle. Then we could light a candle for our departed dear ones. So I lit one for Anne Marie, and said her name out loud to remember her in this world.”

Isn’t that just the most beautiful thing you have ever read?

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Perspective. This is a word I seem to use more in my vocabulary since my illness. I will say, “I have a shifted perspective on things.” And that is quite the general statement, but what my illness has given me is a shock in perspective for one’s health, which I can then extend to other aspects of life.

I was suddenly the sickest I have ever been in my life. And hopefully ever will be. And I was more sick than many people will ever experience. But I was not as sick as others I saw in the hospital. I received many comments about my positive attitude and almost astonishment at my outlook on things. And I know my perspective allowed me this. Even though for a few weeks I was bedridden in the pulmonary unit, I knew there were other patients who were more ill than I was. Once I was walking again, doing my laps around the ward, I would see other people who were completely immobile and hooked to machines for them to breath. And it allowed me to focus on the positives that I still had with my situation.

An analogy I find my myself using, is to imagine someone who has never had a headache before. If they were experiencing a headache for the first time, they would probably be very concerned and worried, because their BRAIN is hurting. And that is really serious. Bur for anyone else who has already had a headache, we know that the pain subsides and it’s really not that big a deal. But to this first time headache person, they would be taking it much more seriously.

Now, I am not sharing this to call anyone out who has done this before, because again, it’s all about each person’s unique experiences, but when I see people complaining (yes, I am calling you complainers 🙂 ), on social media about HOW SICK you are (ex. flu or cold), the first thing I think is, “Suck it up and be thankful. Oh dear. You have a RUNNY NOSE. My lungs were dying.” But, I would have never had this significant of an outlook had I not been through this health journey.

It’s hard to make judgements on your life, having not experienced something to change it.

I have been wanting to write about this topic for months now, and finally today I got the nudge to do so. My bestie has a super bad chest cold right now. And she shares with me how her lungs are so congested and she can’t breath normally. And all along I just tried to provide my sympathy and support quietly. Because I know she really isn’t feeling well and she admits she is a suck when she’s sick. But today it was really great to hear her acknowledge that she knows it must seem out of place for her to be complaining about her lungs, when I literally couldn’t breath before. But we find in the humour in it, and that’s what I adore about our friendship so much. And I offered her my oxygen monitor.

Right now I have a sore throat and my voice is raspy. Arrine has a stuffy/runny nose and a cough. And I would rather not feel sick and rundown, but I have been given the blessing of having an illness to compare this to. And if my lungs not working never got me down, a sore throat sure as heck isn’t gonna get any complaints out of me!

So maybe even if you haven’t experienced a really challenging health issue or other emotional struggle in life, you can still remind yourself that even when you are feeling your worst, unfortunately, there is most likley someone worse off than you. And maybe that will make you think twice before complaining about your whatever…Focus on the positive.

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My mother always stressed the importance of continued learning. She herself went back to finish her Bachelors degree when I was young, still living in Saskatoon. And then she returned for her Masters when I was in high school. She always joked that she was leaving a PhD for one of her kids to complete instead…And I always corrected her, that it wouldn’t be me. I never was interested in more schooling after my undergrad. I wanted to get out into the work force and work (and make money).

When I was laid off, one of my friends suggested I go back to school. And I questioned what I would even want to take. Law has always intrigued me, but I wondered if that was only due to my love of all the Law & Order series. And that loving a tv crime and legal drama, probably wasn’t the best reason to turn my life upside down and return to school full time.

But I didn’t want to overlook the opportunity being laid off was presenting me. For years I had questioned my happiness from my career. So I asked myself, “If I could do anything with my day, that I am passionate about and love, what would it be?” And my answer was writing. But how do you transition your love to write to actually making money at it to pay the bills? Which is how I began to research editing. I have always loved editing for my coworkers and friends, and I feel it comes naturally to me. Plus I am a bit obsessive compulsive about it too, which makes me even better at it. So I looked into what type of classes are offered for editing. Mount Royal in Calgary has an entire program dedicated to editing, but it is not offered online. Then I found through the U of A Faculty of Extension, I could take an Essential Editing course through General Studies. And I thought taking one class would be a good way to start. So that’s what I am doing! Going back to school. I have had one class so far, and I was very naive to think that being in General Studies would be a breeze. I have reading assignments and homework already! And group work! Looks like I am going to really be getting to know the comma for my first assignment. But I am excited. And the plan is to see if I could actually make a go of this at some point.

At the same time, I am happy to report that my days of being unemployed are coming to an end. Although I am sad to leave this lifestyle behind, as I have grown to love it. But I also love (need) money. I will be starting with an engineering company in February, still doing project management. I am excited for the new challenge, as it seems to offer what I am looking for in that respect of my career.

But I need to come back to the idea of continued education to close off this post. I have a copy of my mom’s thesis that she signed for me. She wrote, “December 1999 Kirsten – during the five years I spent on the Masters program, you “grew up” from 15 to 20, finished high school, and started your own degree program. Best wishes for your own continued academic success. Love, Mom xxoo” (Ok, I am such a word nerd, as I just realized that she used an Oxford comma in that list.) As I already said, I never ever envisioned me returning to school again. But I think what has helped me with this transition and decision, are the wonderful women I am blessed to call my closest friends. As they are such inspiration for continued education and the importance of it. We are all in our mid-late 30’s, and all back at school. Mine is by far the least intense, with just one class of general studies, but I want to highlight and honour my super amazing friends who are going back to school, with them still working, raising families, having children, and maintaining a household.

Finishing her undergrad to apply for her Masters in Psychology.

Starting her undergrad in Education (and still a business owner of a salon).

Working on her social work degree.

Finishing a stats class to apply for her Masters in Nursing.

My mom quoted Estes, who wrote Women Who Run With The Wolves, at the beginning of her thesis. “All these stories present the knife of insight, the flame of passionate life, the breath to speak what one knows, the courage to stand what one sees without looking away, the fragrance of the wild soul.”

Like how can I fail, when I have these strong, intelligent, women surrounding me?

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The Creutzfeldt-Jakob Disease Foundation has received a contribution made in memory of your mother Anne Marie from:

“One of Anne Marie’s Friends”

This gift enables us to continue our mission to be here for every family who turns to us for help, whether by providing information, offering a referral for a second opinion, or supporting research aimed at finding a treatment and a cure for this terrible category of diseases.

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I have been wanting to write about this for months now. The spiritual connection I had with my mom on my diagnosis day, or more specifically, my last full day in the hospital. I wrote previously how it was such a draining day, awaiting the diagnosis for so long, and then not really being provided with a specific answer at the time.

After supper I just wanted to go to sleep. But there were things calling to me that I couldn’t leave unanswered. Early in my time at the hospital, I had seen signs for the Aboriginal Gathering Place. And it turned out to be on the floor I was on. Once I was walking again and going out for my strolls, I would pass it, next to the chapel. There was a schedule posted with times for ceremonies throughout the week. And I kept telling myself that I would go. And then I would find myself in bed each night, realizing that I never went.

So on my last night in the hospital, I knew I had to go. I didn’t want the potential regret of not going. I loaded up my walker and started on the journey out of my ward and down the halls to the gathering room. A long time ago, my kindred spirit Trisha, told me how when you are walking or driving under a lamppost and the light goes out, it means that there is an angel with you, as their light is so bright that it turns off the lamppost. The hallway was already a bit darkened, because it was late and the sun had gone down, so the open atrium was not bringing through any sun. I took each step deliberately, feeling that I really needed to connect with the floor with each movement. The door to the Aboriginal Gathering Place was unremarkable. It was a heavy, white door, like any other hospital door, with no exterior indication of the power that was contained on just the other side of it. As I reached the door and started to turn my walker towards it, the overhead light

I opened the heavy metal door and entered the sacred place. Soft, leather brown couches were placed around wooden coffee tables, with amazing artwork on each wall. I sat on one of the couches and just took it all in. And then I played two Buffy Sainte-Marie songs. The same songs I played for my mom when she was taking her last breaths. And I stood and danced, as only one can dance who needs to use a walker still and has reduced lung capacity. But what I loved is that even being limited physically, I felt no hinderance taking my small steps to the drums. I felt I really was dancing to the drums as a whole person. With no limitations.

I spoke to my mom quite a bit out loud. Something I don’t normally do, nor could I remember the the last time I had. I just took my time in that room. The air felt different. Heavier. Like a warm blanket was wrapped around me.

And once I felt that I had spent enough time in that room, I loaded up my walker again, took one last look around the room, said my goodbyes, and slowly made my way back to my hospital bed.

Now that I think back on that day, I can’t remember noticing if the light was still out when I left the Aboriginal Gathering Place or not…